I guess to start I should introduce myself. My name is Carmen. I’m 32 and have a long list of hobbies that include: animal documentaries, finding new music, cuddling my pet bunnies (or attempting to), hiking, camping, biking, reading science magazines, rollerskating, watching roller derby, traveling and hanging with my wonderful friends. I also have CML (Chronic Myelogenous Leukemia).
I was diagnosed in early July, 2008. I ended up in the ER with a (still) mysterious and unrelated stomach ache and was told that my white blood cell count was at around 65K when normal is somewhere in the neighborhood of 5K-10K. From there I was admitted to the hospital and the rest is history. The stomach ache was a godsend, since CML has little to no symptoms in the chronic (first) stage. Many people are diagnosed when they have moved onto the accelerated or blast phases, which makes treatment much more difficult.
My chromosomes 9 and 22 got stuck to each other like a couple of prepubescent kids making-out while wearing braces
For the first 4-5 months after my diagnoses I was doing a real bang-up job of living in denial. I recently stumbled upon a blog belonging to a girl named Dawn. She was my age and diagnosed with CML just a few months before me. She died last month. Needless to say, it rocked me pretty hard and.. well.. normal will never be the same. So after weighing the different options I had for keeping my sanity (therapy, support groups, drinking myself delirious, jumping into an active volcano), I decided that writing a blog of my own would probably be the best way to organize my thoughts, document my journey and ooze my bad emotional mojo onto others instead of holding it inside. Lucky you.
I thought today would be the perfect day to start considering that I have something to celebrate! A few weeks ago I had my 6 month follow-up, which included a bone marrow biopsy (if you haven’t tried it, I highly recommend one.. haha!). My oncologist called me tonight and explained that my results after 6 months were where they hope to have them by 1 year. The PCR test (scroll about halfway down) checks to see how many cells contain the chromosomal abnormality called the Philadelphia chromosome, which is responsible for the excess number of white blood cells found in a person with CML (or at least that is how I understand it). My test showed zero. She explained that there is another test that is still being processed that will give a more exact result, since a CML patient will always have a few retarded cells bumping around. But the gist of the matter is that almost all of my white blood cells are healthy, active little dudes. I never knew I could love the absence of something so much!
So apparently those chemical nanobots that I swallow twice a day are doing their job. Good job, little cancer ninjas! I’m on a study drug called Tasigna (Nilotinib). Tasigna is already approved as a second line of defense, to be used when a person becomes resistant to the usual first-defense drug (Gleevec). The study allows me to skip Gleevec. The hope is to find a drug that the body won’t become resistant to, resulting in remission as long as you take the pill. My side-effects thus far have been hair loss (which almost drove me mad, but has since subsided), a rash on my arms and legs and minor liver damage (sadly I’ve had to say “good day, sir” to alcohol). Still, I feel quite lucky when I read about some of the folks on Gleevec who have had pretty severe fatigue and bone/joint pain. Aside from timing pills and using a blog to relax instead of a glass of wine, I feel pretty normal.
I don’t plan on being this long-winded every time. And I certainly do not plan on talking CML every post. I’m hoping that this blog will grant me fun and expression as much as it documents my battle with leukemia. With that said, I would like you to meet my favorite internet phenomenon, Oolong. Oolong is no longer with us. I doubt he died from something as boring as cancer. He probably died of cuteness. Which is really the way we all want to go. I’m sure he’s guarding the pearly gates with a cloudcake balanced upon his head.
